Saturday, February 6, 2016

Positive Health Online | Article - Lost in Translation - The ME-Polio Connection

 
"The symptoms of severe and very severe  ME are from the seventh circle of hell."
 
 
 
* * *
Dr. Dowsett, old enough to remember polio, observed that when the CFS misnomer was coined in 1988, all the history/research pertaining to ME and its connection to polio conveniently disappeared.
 
 

Saturday, January 30, 2016

R.I.P. Ray Colliton

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30 January 2016
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By Maryann Spurgin

Longtime ME patient Raymond Colliton died
yesterday of respiratory issues
(bronchitis/-emphysema/ pneumonia). He
was 68.

Ray was the founder of the Co-Cure project
and also was involved in the ME Society of
America website.

Here is a eulogy from his good friend
Maryann Spurgin.

RAYMOND F. COLLITON
March 10, 1947 - January 29, 2016

"There is no possession more valuable than a
good and faithful friend." ~ Socrates

"If the machine of government is of such a
nature that it requires you to be the agent
of injustice to another, then I say, break the
law." ~Henry David Thoreau

By Maryann Spurgin, Ph.D., ME Society of
America

It is with great sorrow and sadness that I
must announce the death of my close friend
and our colleague, Raymond F. Colliton,
known to his friends and family as a brilliant,
witty, erudite, kind and giving person, an
entertaining conversationalist, and devoted
to his family.

Ray died peacefully in hospice care on
January 29, 2016, with his loving wife,
Bernice Melsky, at his side. He was 68 years
old.

Ray is known in the ME community as the
owner and manager of the Co-cure project,
an email list serve and (now-archived)
website that kept the community of
researchers and patients informed on the
science and politics of ME for decades.

Ray also did all of the webmaster work on
my "ME Society of America" website.

He spent much time, energy, and money
keeping the ME community informed as well
as helping patients, although he had not
been involved in Co-cure for the last two
years due to illness & retirement.

He kept a very low online / internet profile,
staying out of the limelight and working
behind the scenes.

Ray had a Bachelor of Arts degree in
philosophy; he shared the philosopher's
ongoing questioning of the status quo, and
he flouted anything that stood in the way of
helping his friends and family, knowing that
law and morality were often on opposite
sides.

He understood the power structures of the
world, of law, business, and politics.

He was classically educated, studied Latin,
knew politics, history, economics, and
science, and I thoroughly enjoyed his
knowledge on so many things and his
entertaining conversation for many years.

Ray had a sporting, clever sense of humor
and often took hilarious pot shots at my
(many) flaws, which had me in stitches
laughing every time we spoke.

Ray, when young, had planned to become a
Catholic priest; after obtaining a degree in
philosophy, he gave that up to study
finance, and he was a financial whiz.

Prior to becoming ill with ME in 1988, he had
a career in systems administration for a
Fortune 500 company, then went on to
develop his own small business consulting
firm.

He had extensive experience in pension plan
and employee benefits plan design and
management.

He was the managing owner of the Co-Cure
Project, a large international information
distribution e-mail list and Web site, both of
which were devoted to science and
advocacy issues surrounding ME.

Ray went into the hospital in Bensalem, PA,
with bronchitis in late December,
complicating his emphysema.

Hospitalization made him worse, he became
weaker, too weak to swallow, he developed
pneumonia & had to have oxygen and a
ventilator in the ICU.

After several weeks of fighting to get better
in ICU, Ray and Bernice made the decision to
move him to the hospice section of the
hospital on January 28.

My heart goes out to his caring wife, Bernice
Melsky, his brother Edward, sisters Margie
and Maggie, daughter Carrie and many other
family members who loved him.

My heart is very heavy because he was one
of my best friends EVER, another close friend
gone too soon.

May his adoring family find peace in
wonderful memories, and may those of us
with ME be grateful for the massive amount
of work he did to help patients as he worked
behind the spolight.

He will live in the hearts of those of us who
knew him.

Ray, you are missed.

This post was approved by his brother,
Edward V. Colliton, Ph.D. Written by
Maryann Spurgin, Ph.D., long time friend of
the deceased and founder of the ME Society
of America, now archived:
https://web.archive.org/.../http://www.cfids-cab.org/MESA/


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Tuesday, January 26, 2016

I feel like I’m letting my heroes down

 
I'm a musician who can't play music anymore. I feel like I'm letting my heroes down. - The Washington Post

 

These kinds of stories are so popular that activists and scholars have coined the term "supercrip" to describe them. Colloquially, we might call it "inspiration porn."

Unfortunately, they obscure an important truth: Sometimes, suffering doesn't make us better artists. And that's okay. Acknowledging this un-glamorous fact may actually yield wisdom of a different stripe, wisdom about what it means to be wounded and fallible, yet unapologetically human.

... As much as I would've hoped to find some inspiration in pain, it hasn't panned out. No overcoming narrative, no virtuosic courage. But it wasn't for lack of trying.  ... It was just one more thing excised from my daily activities, one more broken luxury in a life falling silent. The more I've felt pressured to rekindle my love for music, the more dejected I've become in failing to do so.
 
... Because inspiration porn — like any porn — isn't always grounded in reality, instead propping up stratospheric standards of beauty, stamina  and narrative intrigue.

Not everyone gets to be a hero. Some people barely manage to hold on. So from time to time, let's tell certain illness and disability stories as they are — even if they don't come with the superhuman protagonists or stirring soundtracks we so crave.

* * *
I refuse to try to be SuperCrip.  I didn't run marathons when I was healthy; I don't intend to start now.
 
I've had days -- years -- where just getting out of bed took as much out of me as running a marathon. 
 
"Just one more thing excised from my daily activities" -- I was diagnosed in 1988, and over the next dozen years one enjoyable thing after another had to be removed from my life in order to keep making it through the workweek, until I was down to work and hygiene.  Even eating and tidying sometimes had to be skipped in order to keep working.  But I didn't get called SuperCrip for that.  I didn't even get called SuperCrip for figuring out how to work from home flat on my back in bed when I was too sick to sit up.
 
No, to be SuperCrip you have to do something that even healthy people find difficult.
 
What I was called was rude names for not being able to keep the house spotless when I was bedridden.
 
The truth about my story is that everyone and everything I was told I could rely on abandoned me.  Friends were always "too busy" to even spend a few minutes bringing me a sandwich. In 16 years, the only time a neighbor ever brought food, it was a few party leftovers that wouldn't fit in her fridge, and I had to turn down most of them because of my allergies.  Prayers didn't produce a miracle cure, or even a doctor who had a clue -- the best I was able to do, after several years of searching, was one who was willing to listen when I tried to educate him.
 
If you're coming here looking for inspiration porn, look elsewhere.  My only superhuman feat is continuing to muddle through life alone and without help from any of the people I was told I should turn to for help.  Even my church refused.

Sunday, January 24, 2016

Complexity of diagnosing POTS

http://www.ashjournal.com/article/S1933-1711%2816%2900036-X/abstract

The complexity of diagnosing postural orthostatic tachycardia
syndrome: influence of the diurnal variability

Jangsup Moon, MD, PhD1, Han Sang Lee, MD1, Jung-Ick Byun, MD, Jun-Sang
Sunwoo, MD, Jung-Won Shin, MD, Jung-Ah Lim, MD, Tae-Joon Kim, MD,
Yong-Won Shin, MD, Keon-Joo Lee, MD, Daejong Jeon, PhD, Keun-Hwa Jung,
MD, PhD, Soon-Tae Lee, MD, PhD, Ki-Young Jung, MD, PhD, Kon Chu, MD,
PhD, Sang Kun Lee, MD, PhD
1These two authors contributed equally to this work.


Publication History
Published Online: January 18, 2016
Accepted: January 9, 2016
Received in revised form: December 28, 2015
Received: October 20, 2015

Highlights

•We evaluated how the diagnosis can be missed in a single orthostatic
stress test.
•Orthostatic tachycardia is more prominent in the morning, but not always.
•Symptoms were more frequent in the morning, but not during majority
of the tests.
•Orthostatic hypotension can be accompanied in POTS.
•We suggest repeated orthostatic stress tests in clinically suspected
POTS patients.

Abstract

We investigated how the diagnosis of postural orthostatic tachycardia
syndrome (POTS) would be changed due to diurnal variability in
orthostatic tachycardia. The orthostatic vital sign (OVS) test was
administered to each patient twice, in the afternoon of the day of
admission and the next morning (n=113). Forty-six patients were
diagnosed with POTS, and the remaining 67 patients were assigned to
non-POTS group. Heart rate increments after standing were larger in
the morning than in the afternoon in every group (all P < 0.001).
Among the POTS patients, 82.6% fulfilled the diagnostic criteria for
POTS in the morning, and 52.2% in the afternoon. The majority of the
POTS group (65.2%) displayed normal result on single OVS test.
Orthostatic intolerance symptoms were provoked in only 45.7% of the
POTS patients, more frequently in the morning. In conclusion, diurnal
variability in hemodynamic parameters and provoked symptoms
significantly challenged the diagnosis of POTS.

Friday, January 15, 2016

FREE PREVIEW - Forgotten Plague

We're pleased to announce that the Free Preview for Forgotten Plague is now available online! Please share with everyone who you think might be interested, from doctors to legislators and everyone in between. We hope you enjoy it! And please be sure to chime in with what you think via social media and directly to us at forgottenplague@gmail.com!

The link will be live until Monday evening at 7pm EST (12am GMT)

This version also has English subtitles.

Link: https://vimeo.com/149973440

Password: forourfans

Saturday, December 26, 2015

Ian Lipkin: Three to Five Years* to Solve Chronic Fatigue Syndrome

 
 
In a talk covering his virus hunting career, the threat of pathogens to humanity, and his work with chronic fatigue syndrome (ME/CFS), he dropped a bombshell: he stated that he believes it's possible to solve ME/CFS in three to five years. 
 
Called the top virus hunter in the world, Ian Lipkin runs the Center for Infection and Immunity at Columbia, and is the director of the Center for Research in Diagnostics and Discovery (CRDD) at the NIH. He also worked closely with Steven Soderbergh on his film Contagion.
 

Likpin cited the findings of their work to date.

  • The suspected pathogens don't appear to be the problem (the CII is reportedly looking further at herpesviruses.)
  • Evidence suggests altered microbiomes (gut flora) are present
  • Striking differences in immune expression between shorter and longer duration patients appear to be present
  • Preliminary evidence suggests that levels "X" and "Y" metabolites and, at least, one immune protein are significantly altered in ME/CFS. (Lipkin embargoed this information pending publication of the paper. One of them is highly unusual.)

Lipkin emphasized, though, that ME/CFS is not a one-size fits all disease. For instance, it's possible that fungi may be a problem for some patients. That's an intriguing idea given the recent fungi funding in Alzheimer's disease published in Nature.

Then Lipkin made his bold declaration "We're going to solve this in three to five years", with a big proviso. Provided the resources are made available, he believes science can crack ME/CFS fairly quickly.

 

Lipkin was at the event to support the Simmaron Research Institute's next spinal fluid study. The results of the first one – the most extensive spinal fluid study ever done in ME/CFS – were eye-opening. A comparison to multiple sclerosis (MS) found evidence of immune dysregulation almost equal to that found in MS. The difference was that instead of being raised, the cytokine levels were reduced in ME/CFS.

That finding surely left a big smile on Lipkin's and Hornig's faces.  Earlier they had found evidence of a profound reduction in immune functioning in the blood of later-duration ME/CFS patients. Now a similar reduction was found in their spinal fluid. Having findings in two different systems match has rarely happened in ME/CFS. That suggested they were uncovering system-wide problems.

No wonder Lipkin was eager to begin a new and larger spinal fluid study. It's part of achieving his bucket list.

 

 

- See more at: http://simmaronresearch.com/2015/12/ian-lipkin-three-to-five-years-to-solve-chronic-fatigue-syndrome-mecfs/#sthash.FI5MX1L9.dpuf